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Childhood Brain Tumor/ Appointment w/Mayo FL

Brain Tumor | Last Active: Dec 24, 2022 | Replies (12)

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Hi. I read your post and I can understand your feelings as you expressed them. Getting quality medical help for complex conditions is wearing, especially when you are the patient as well as the person doing all the case management.
You've had a life experience so far that has included incorporation of medical services thru much of it. I can relate to that too. We are perhaps oriented more seriously about life because of this. And we have a position of dependency on medical services that goes down very deep within us, in my experience, from that. It's valid but also is the source of much stress. Feeling powerless sometimes may contributes to depression.
Digressing for a moment, changes in health care insurance plus the COVID-19 pandemic havr disrupted+ overloaded the US healthcare system. This is national from the least to the greatest. It has impacted everyone seeking services. I'm mentioning this to put the current system in perspective, separate+ distinct from your previous experience. We all have to adjust our expectations.
When I contacted Duke about my medical issue, I encountered delay follow up, too. They too had trouble tracking my mailed images. It was stressful. I felt disregarded in the process. But it later all came together. I learned that the experts review the avalanche of requests in their off clinical time at Duke, such as after the day ends and on their lunch breaks, on nights + weekends. And they do this continuously. So I think of them as very knowledge people sacrificing their own time to try to help all the people reaching out in desperation.
Mayo Clinic is The Best. But I don't agree in placing your last+ final hour in them. I say this because, believe it or not, THERE'S MOST ALWAYS ANOTHER DOOR IF THE ONE YOU'RE KNOCKING ON DOESN'T OPEN. I learned this myself. Although it may seem otherwise, whatever situation your are facing, ➡️ There is ALWAYS HOPE ⬅️ We can't see it looking forward, but life confirms it when we look backwards.
While Mayo Clinic is the top, there are many excellent #2's. And sometimes a Doctor is unexpectedly around bc he/she had to deal with a family member who had a rare or complex condition+ to a special interest. Life has surprises.
Don't be discouraged by delay. Correct me if I'm wrong but you're not in an emergency status. You have time. Use that time to build your faith, fill your soul with hope+gratitude and increase your health in ways like practicing good nutrition+ improving physical conditioning.
I have a faith in the God of my belief, and I place my dependency in Him+ draw from His Well of Hope thru all times. In my life journey, this is my only means of coping + overcoming.
I am virtually sending you a Christmas present of a large box (with a bow) of Hope, a bag full of patience and a picture of your future that is not yet developed but it's on a background of sunny days.
My Best to you
Written but not reviewed for editing bc we're in a power outage and it's 7° F
(but I'm doing fine.)

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PS after thought. I know that Scripps Clinic in La Jolla CA specializes in rare + complex cases. All admissions were by appt (vs ER) in the past at least. You might consider them too as a resource.

I am in an emergency. I have gone to many university hospitals(6-7 plus many in my local) I can't get off my couch & do the basics of everyday life. I get told I'm complicated and passed on. I've lost a lot of faith & very close in giving up. One can only take so much on top of the nastiness I've received from doctors because they can't figure me out so they give up. So I would say this is an emergency. I have tried to have a positive attitude throughout the years but when you can't even barely take care of yourself such as shower, brush your teeth get your haircut shop or even perform the daily basic activities of ones life that's a huge problem. The debilitating fatigue, hormonal issues, pain, severe depression and more are unbearable. So to to contact Mayo & get my records together was very difficult but travel there is going to be even more difficult because of what I mentioned above and for me to even try & go anywhere else out of state would be virtually impossible because of how bad I've gotten. I've done this record thing many times trust me I'm a pro at this. It's just when you've been to many university hospitals and they don't know what to do with you it's disconcerting. Just because a doctor or doctors have all these degrees etc means nothing if they can't help me it means nothing. Ive pretty much stepped back from everything if I get in I get in. I've been getting along so far & when I've had enough then I'll stop totally.